Q: Dear Regina, I live and take care of my mum who has middle stage Alzheimer’s. There are several of us siblings and they are all supportive to my mum’s care. However, I have been very depressed lately because it is so hard to watch mummy go down like this. The things she does and does not do anymore is killing me. She can still eat on her own and walks without assistance but she is not here. I wonder if she is hurting or if she is happy or not. Are people with dementia happy? What do you think?
A: There is no way anyone can take away the pain of watching someone you love vanish and deteriorate right in front of you. This is heart-wrenching to watch and be a part of. Your feelings of despair are validated and very healthy. This healthy depression you are experiencing is normal, so please do not hide it. You may feel this for a short time or a long time. Depression becomes unhealthy when you are struggling to function on a daily basis and you cannot come out of it. This is level 2 and 3. You will need professional help. At level 1, a good friend to talk to is very therapeutic.
When you are ready to move forward with the grieving of all the losses around your mum’s condition, as quoted from a book I once read by a doctor, Allen Power, I suggest you focus on “preserving your mum’s identity, celebrate her personhood and create meaningful moments with your mum.”
Understand that dementia is a shift in the way your mum sees and relates to the world around her. She can still learn and adapt to the changing perceptions and be happy in moments. You can make enjoyable memories that have meaning. You will be amazed at your creativity. You are the key to helping her be comfortable. She will teach you what she is comfortable with. Your job is to look and notice her new way of communicating. You can learn new skills to do this through the local Alzheimer’s Association with some of the classes they have available. I recommend you contact them.
Q: Dear Regina, My husband and I have taken my mother-in-law with Alzheimer into our home. My husband goes to work and my children are in school most of the day. My mother- in-law has become restless at night and wandering in the house when everyone is sleeping. We have woken up to a mess in the kitchen, washroom and her bedroom. It was so exhausting to keep cleaning this.
We took her to the doctor to see if something was causing her to change and the doctor told us to give her sleeping tablets because her days and nights are mixed. We followed the instructions the doctor gave us and my mother-in-law slept all night and almost all day. She barely ate anything. We were a bit worried about the tablets being too much for her, so we were going to notify her doctor, but then she had a fall and hit her head and fractured her right leg.
This has been a terrible experience for us and she is now stuck in bed and keeps trying to get up. The doctor says she can walk as tolerated, but when she does she is in pain and will sit down. We have pain tablets for her but we have not given them to her. We are lost on how to help her at this point. I try to stay at her side in case she needs to get up. I am scared to leave her alone. My question is how do other families handle this?
A: Wow! My dear, I will welcome any comments from others on how they are handling this situation. You are teetering on caregiver burnout. Find someone who can relieve you for a couple of hours a week or daily.
Unfortunately, over-medication is a worldwide problem for our frail elderly and especially for those living with dementia. It is quite an easy answer to label a person with dementia as having “behaviour problems” because they are not sleeping when the rest of us are, or they are not doing what we want them to do.
Our expectations on a person with brain changes are unreasonable. We are expecting them to operate in a world that no longer makes sense to them. How a person with dementia perceives their surroundings is no longer the same as what you and I perceive it to be. We must truly change our thinking on what we expect from a person who has brain changes. Most medication makes things worse. Looking forward to hearing feedback.
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